The Other Families

With my special ed kid in high school, I started attending evening lectures and seminars about what to do when he turns 18. We’re not quite sure what supports that Ian will need as he gets older, so I am preparing for the worst case situation and the best case situation.

The worst case scenario is that he can never manage the real world on his own and will need full support for everything from work to food to housing. The best case scenario is that he can use his computer skills to find a proper job where they won’t mind his oddities, and he can live independently enough that he will only need light oversight from a family member.

Last week, I went to one talk where a social worker for the county gave us an overview of all the tasks that a special ed parent must do before the child turns 18, and then how they would have to manage the health, food, housing, transportation, employment, and social needs for their child. I knew some of those things already, but this was the first time that I got the broad overview.

It was horrific.

Until your child is 21, the school district is largely in charge of people with special needs. Not only do they have to provide the child with an education, but they also provide counseling, physical therapy, social groups, and transportation. They don’t necessarily provide health care, but in the special ed school that I taught at it in the Bronx many years ago, they wheeled in kids in wheelchairs who were semi-comatose and supervised them for the day. By law, they must care for all children until they turn 21.

Special ed parents talk about what happens when their child turns 21 as “falling off the cliff.” Services stop.

The woman from the county explained that parents had to manage all those aspects of their child’s life on their own. Yes, there were different bureaucracies with different pots of money that could help you, but the money was small and each bureaucracy had its own paperwork and quirks. It became very clear at this presentation that some parents, specifically the mothers, now had a full time job managing their child’s life.

It is a full time job just filling out the paperwork. And the quality of services is terrible. Yes, they’ll give your kid a lift to his job at the supermarket pushing shopping carts for less than minimum wage, but it takes 45 minutes for the van to arrive. At some point, the state will provide your child with housing, but there is a ten year waiting list for an apartment.

The woman explained that parents had to spend $5,000 on a lawyer to create a special needs trust and to get guardianship over the child-adult, which is necessary to pay their bills and to make medical decisions. She briefly mentioned that the difference between getting power of attorney versus the guardianship option, but told us to consult with a lawyer about these matters.

At one point during the talk, my face got all red as I realized the scope of work ahead of me, if we face the worst case scenario. I think I burst out with “THIS IS INSANE!” in the middle of her presentation.

How can anybody with a family with special needs ever vote for a Republican? I can’t understand how anybody would vote against their family’s needs in this way. We have no safety net in this country.

If some cells divide incorrectly in utero, you have spend the rest of your life out of the workforce, and instead your days become about managing paperwork just to get your child-adult out of the basement. A couple of wonky cell divisions means a substantially poorer family income and a lifetime of working your way through phone trees to find the right dispirited bureaucrat who will okay your transportation voucher.

If I knew all this twenty years ago, I might not have decided to be a parent. I probably would have anyway, because my kids bring me so much joy, but if I knew all this, I would have certainly paused and reflected on the risks.

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We celebrated Memorial Day weekend with my family. Highlights included Ian in a parade, Bruce Springsteen on Broadway, and late night drinks at a hotel bar in the city. I hope you all had a splendid weekend, as well.

It still feels like a vacation time, because Steve took the day off. He’s power washing the back patio right now, while I finish off some writing work on the computer.

Here’s what I’m thinking about today:

1,475 missing children

Inspired by all the navy blues and green at the royal wedding, I wore this and this to our date night in New York City last weekend.

I really need to be paying attention more to the teacher strikes.

David Sedaris has a new book. I’m a fan of his writing and his ability to turn his books into a fabulous, wealth-inducing speaking series.

Steve and Ian gave Solo two thumbs up. Steve and Jonah gave a fishing trip at a local lake two thumbs up. Wow. We really did a lot this weekend.

I’m walking away from the computer to read the article about the New American aristocracy in the backyard.

And More Gossip From the Mechanic

Last night, Jonah drove home from an evening of Fortnite at Jimmy’s house and announced that there was a bad smell coming from the car. Bad smells aren’t enough to move us to deal with car problems. But when black smoke started coming out from under the hood this morning, we agreed that prompt action was needed.

I wasn’t in the mood for prompt car action, because I had a full day of work planned out. Instead, I had to drive 30 minutes to the mechanic and pick up a spare car from my parents. Any trip to my parents now requires an additional 30 minutes on simplistic tech problems and lunch and tea. On the way back, I had to pick up groceries.

The day is shot. Ugh. Might as well blog.

When I dropped off the car, I had to do some mandatory chit-chat with Jimmy the mechanic. Jimmy fixes my extended family’s fleet of Toyotas and Subarus. He’s honest and hardworking and worth the 30 minute drive.

Jimmy was in a bad mood this morning, too. His best worker, Dave, quit, after working with him for eight years. Dave went to work for a dealership where he will get paid more money and get health insurance and benefits. As a small business owner, Jimmy can’t offer health insurance. His own health insurance is 20K per year.

Jimmy needs to find a replacement and is stuck. He had one guy for two weeks, but he showed up late every day and he only lived a block away. He fired him. He said that all the guys coming out of tech school are terrible. They don’t want to work hard or get dirty. I guess tech schools aren’t attracting the highest quality workers. I also guess that not too many people are willing to work at a job without health insurance.

Anyway, this gossip is interesting mostly because it is almost the exact same story that I heard from my contractor two weeks ago.

I’m interested in these stories not just because I think it’s a sign that there is great unraveling of the economy. I’m paying attention, because it’s personal. I can’t imagine that Ian is going to be able to attend a traditional four-year college. His reading skills aren’t on grade level, and he certainly could never manage the social skills of dorm room.

He does, however, have mad computer and engineering skills, so I’m started to dip my big toe into information about technical schools and community colleges. What’s the best way to get him in a cubicle with a computer? There are lots of stories about how vocational schools are the wave of the future, but I suspect it’s more hype than reality.

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NBC is very nervous about Ronan Farrow is going to say about them. Good!

Enough with the open floor plans already! But foldable houses are totally cool.

Going to college is a gamble and people should be informed about the risks — no degree, but tons of debt. From the New York Times:

People who have dropped out of college — about 40 percent of all who attend — earn only a bit more than do people with only a high school education: $38,376 a year versus $35,256. For many, that advantage is barely enough to cover their student loan debt.

Drezner writes about Tom Wolfe in the Washington Post, with a nice shout out to me.

Great article in National Geographic about what happens to the plastic we throw out.

Tom Wolfe on Graduate School

Very sorry about Tom Wolfe’s passing. I loved Bonfire of the Vanities.

Here’s what Wolfe said about going to grad school.

I had just spent five years in graduate school, a statement that may mean nothing to people who never served such a stretch; it is the explanation, nonetheless. I’m not sure I can give you the remotest idea of what graduate school is like. Nobody ever has. Millions of Americans now go to graduate schools, but just say the phrase—”graduate school”—and what picture leaps into the brain? No picture, not even a blur. Half the people I knew in graduate school were going to write a novel about it. I thought about it myself. No one ever wrote such a book, as far as I know. Everyone used to sniff the air. How morbid! How poisonous! Nothing else like it in the world! But the subject always defeated them. It defied literary exploitation. Such a novel would be a study of frustration, but a form of frustration so exquisite, so ineffable, nobody could describe it. Try to imagine the worst part of the worst Antonioni movie you ever saw, or reading Mr. Sammler’s Planet at one sitting, or just reading it, or being locked inside a Seaboard Railroad roomette, sixteen miles from Gainesville, Florida, heading north on the Miami-to-New York run, with no water and the radiator turning red in an amok psychotic over boil, and George McGovern sitting beside you telling you his philosophy of government. That will give you the general atmosphere.

Weed and Teenagers

I’m going to express my unpopular opinion. I’m not excited about the legalization of pot, which is likely going to happen soon in New York and New Jersey.

Yes, I know that the enforcement of these laws is especially tough on minority communities. I know that regulations reduce the amount of bad drugs. I know that it brings in a lot of revenue for cash-strapped state legislatures. But it just sucks for the parents of teenagers.

I am extremely grateful that Jonah survived high school, got into a great college, and has a super demanding major that makes him study on Saturday nights. Because I’ve seen how things can go south.

Yeah, I’m in a UMC suburb, but those kids get in trouble, too. Big time. And it’s pot that fueling the trouble, not the Bud Lights that they get from a big brother. Since the kids are all under 18, they aren’t getting jail time, but they are still going on probation, going before judges, getting suspended, selling, and upgrading to more serious drugs. It’s not making the papers, but it’s happening.

The parents sit in the bleachers at football games and whisper about these matters. They share tips for finding the stashes under the beds and spy on the kids on social media. They trade the business cards of lawyers. They warn each other about the instigators who seem to be at the center of the action.

Teenagers are dumb, and their brains are too sensitive to chemicals. Most parents have given up on trying to stop the Juuls, but aren’t ready to deal with the new problem of legal weed. I’m so, so, so happy that Jonah is sweating it out in his bio classes and that Ian is immune to teenage vices, because our suburban town is going to go up in smoke very soon.

More on Social Skills

Last night, on the way back from a Mother’s Day celebration at my brother’s house, we had to have a serious talk with Ian about the “Five Deadly Words” — ugly, stupid/dumb, old, smelly, and fat. He can’t address people (or their dogs) with those words. He wanted to know if they were curse words. We told him that these words were as hurtful as curses, and he should never use them.

Social rules have to be concretely explained to Ian. One we establish a rule, then he’s good to go, but he needs them to survive social situations. He doesn’t naturally know that you can’t say “Good-bye Old Woman” to someone when he doesn’t know her name. We explained to him that people love their dogs as much as their children, so those words apply to people’s pets as well.

Over the years, we’ve had to set this rule plus dozens more to help Ian navigate the outside world. I’m writing up these rules this week.

Have you had to directly instruct your children or your family members about social or conversational skills? Tell me about it.